1. NIHR RP-PG-1209-10013 A multi-faceted approach to collaboration: The BRIGHTLIGHT: experience Dr Rachel Taylor & Dr Lorna Fern on behalf of the BRIGHTLIGHT Team

2. No man is an island, Entire of itself. Each is a piece of the continent, A part of the main. John Donne

3. The BRIGHTLIGHT STUDY The 2012 TYA Cancer Cohort Study UCLH:  Professor Jeremy Whelan (CI)  Dr Rachel Taylor  Anita Solanki  Susie Pearce  Martin Lerner UCL:  Dr Julie Barber  Professor Steve Morris  Professor Rosalind Raine University of Leeds:  Dr Richard Feltbower St James’ University Hospital  Dr Dan Stark Cancer Research UK  Dr Lorna Fern GOSH/LSBU  Professor Faith Gibson London South Bank University  Dr Cecilia Vindrola University Hospitals of Southampton  Louise Hooker NWCIS  Dr Tony Moran  Dr Catherine O’Hara NCRI CSG TYA CCG:  Hannah Millington

4. NIHR RP-PG-1209-10013 BRIGHTLIGHT  BRIGHTLIGHT is an NIHR funded programme grant (ref: RP-PG-1209-10013)  Aim is to evaluate teenage and young adult cancer services in England through a series of inter-connected studies  Central to BRIGHTLIGHT is the 2012 TYA Cancer Cohort Study Evaluation of care according to patient experience

5. NIHR RP-PG-1209-10013 BRIGHTLIGHT participants  BRIGHTLIGHT cohort includes 2,012 young people  Longitudinal study over 3-years  Data collection through a bespoke survey: the BRIGHTLIGHT Survey  Experience survey reflexive to young people’s life situation

6. What is collaboration? Collaboration is working together to achieve a goal. It is a recursive process where two or more people or organisations work together to realize shared goals (Wikipedia, accessed 19/10/12)

7. The BRIGHTLIGHT Collaboration BRIGHTLIGHT Health professionals Young people Academics & higher education Cancer registries NIHR Cancer Research Network Quantitative Qualitative ≈150 acute NHS Trusts Wider TYA community Industry

8. Collaboration: Academic

9. Collaboration: Cancer registries  North West Cancer Intelligence Service (NWCIS) Identify ALL young people diagnosed with cancer Cancer Waiting Times Database First definitive treatment data Patient identifiable data without consent Secretary of State for Health approval National Information Governance Board (NIGB)

10. Collaboration: NIHR Cancer Research Network  32 Local networks (current view)  Researchers in every NHS Trust/every hospital  Local knowledge  Administrators

11. Collaboration: Network researchers  Cancer clinical trials  Range of backgrounds  Range of expertise  Limited-to-no experience in ‘health services’ research  How can we facilitate transition from trial to HSR?

12. Focus groups with researchers Aims  To reflect on the study design and role in recruitment  Explore potential problems in recruitment  Discuss methods to overcome problems

13. Participants  34 researchers Network Managers Clinical Research Nurses Clinical Trial Practitioners Data Managers  21 NIHR CRN

14. Methods  Focus groups - challenges Geographical spread Qualifications  Solution - Ideation Exchange Online moderated ‘focus’ group Two sessions

16. Results  Challenges  Encouraging participation  Role in recruitment Identifying young people Gaining consent Initial contact Speaking to young people

17. Collaboration: Health professionals 29% 33% 60% 66% 100% 25% 66% 100% 33% 40% 50% 100% 50% 100% 71% 100% 60% 45% 0% 100% 40% 100% 43% 100%

18. BRIGHTLIGHT Principal Investigators  Oncologists  Haematologists  Cardiologist  Gastroenterologist  Urologist  Paediatrician  Lead Nurse  Nurse Consultant  Advanced Nurse Practitioner  Clinical Nurse Specialist  Research Nurse  Clinical Trials Practitioner

19. Collaboration: Industry  Data collection Survey expertise Interviews in the home Nationwide Languages Disability Quality control

20. Collaboration: Wider cancer community

21. 1. Manipulation 8. Youth-initiated & adults sharing decisions 4. Assigned & informed 7. Youth-initiated & directed 6. Adult-initiated, shared decisions 5. Consulted & informed 3. Tokenism 2. Decoration Youth & adults sharing decisions Collaboration: Young people Hart (1997) Ladder of Participation, children’s participation: From tokenism to citizenship, UNICEF

22. How? http://www.ukdrn.org/lrn/nec/public.aspx

23. The Core Consumer Group James Ashton Hannah Millington Katie Brooman Tom Grew Carol Starkey Identify research area Design the research study Publish research results Carry out the research Life changing impact of diagnosis Provision of information Place of care Role of health professionals Coping: Peer support Psychological support Life after cancer Analyse research results

24. Life changing impact of diagnosis Provision of information Place of care Role of health professionals Coping: Peer support Psychological support Life after cancer Eight key themes informed the BRIGHTLIGHT survey

25. Thinking back to the ‘place of care project’. How important do you think ‘quality of life’ is? (n=149)

26. BRIGHTLIGHT Young persons reference group Focus groups Study design Testing materials Website Content Design Cognitive interviews Contact materials Clinic posters Newsletters Branding Data collection

27. What’s in a name!? Essence of care Colossal youth

28. The Essence of TYA Cancer Care

29. ‘Branding workshop’  Nine young people aged 18-26  Aged 14-25 at diagnosis  Two independent creative advisors  December 2011

30. Aims  Generate name and brand for the study  Create ‘moodboards’ for logo design

31. Brand Transformation -Anger -Confused -Depressed -In denial -Lonely -Not interested (in study) -Pressured -Hurt -Relieved (answer) -Scared -‘Want to be part of this’ -My views are important -I want to take part in national study -Interested -Intrigued -I can make a difference -Aims and objectives of study -Approachable -Getting answers -Groovy updates -Inclusive and not alone -Regular Newsletter -Something to look forward to

32. If the study were an object

33. Our brand identity  Friendly  Supportive  Inspiring Reasons to believe 1. Making a difference 2. My views are important 3. Its inclusive 4. First of its kind 5. Long awaited

34. Thought shower of names NameReason LILACLiving In Life Accommodating Cancer DROPEach patient represents a drop, lots of drops makes a ripple which in turn makes waves of change. PICSPowerful Innovate Cancer Study PYSDPowerful Youth Study BRIGHTLIGHTLight at the end of the tunnel, leading the way for other young people

35. The logo

36. Essence to BRIGHTLIGHT

37. Summary  BRIGHTLIGHT: the most extensive evaluation of cancer services in England  Based on young people’s needs as well as health professions and researchers  Its success has been and is dependant on  Extensive inter-professional, inter-organisational collaboration  Extensive involvement and engagement with young people

38. Collaboration- not for the faint hearted!

39. Conclusion “I like the idea that it’s designed by young people; I worked for the university here for a while and we did a study there looking at academic feedback when we had it designed and run by young people and it was completely revolutionary to the university and I’m sure it’s just as revolutionary in the healthcare world.” Male, aged 22

40. Other collaborators Special thanks to the following: Sue Morgan MBE & the team in Leeds Professor Allan Pacey Alexandra Brownsdon Teenage Cancer Trust CLIC Sargent Pan Birmingham Cancer Research Network & the TYA teams at University Hospital Birmingham, Birmingham Children’s Hospital & the Royal Orthopaedic Hospital The TYA team at Addenbrooks Hospital The TYA team at University Hospitals of Southampton The TYA team at Guy’s and St Thomas’ Hospital

41. Thank you for your time This presentation presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG-1209- 10013). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Email: brightlight@uclh.nhs.ukbrightlight@uclh.nhs.uk Website: www.brightlightstudy.comwww.brightlightstudy.com Phone:0741 555 7668

43. www.brightlightstudy.com